After my wife was diagnosed with Alzheimer’s, she lived eight years. During that time, we visited 12 physicians: internists and a variety of specialists, including neurologists and psychiatrists. After appointments, Jane would say, “Why doesn’t the physician talk to me about what’s going to happen?” Not one physician ever asked her how she felt about having the disease or what symptoms she was aware of or how her life had changed because of the illness. Not one physician ever said the word “Alzheimer’s” to her. Initially our internist told us she had “dementia.” She often referred to that word and her resultant fear that she was “going crazy.” Do health care professionals think a person has to be a Latin scholar to know that “dementia” means “out of your mind”?
It was heartening to read that DSM-5 uses the term “neurocognitive disorder” to replace “dementia.” Would that the entire medical profession might accept APA’s precedent and eliminate it and the term “the demented.”
Alzheimer’s patients are not out of their minds. They are very much in their minds, and it is a dark, frightening, and lonely place. Perhaps that’s why physicians and caregivers don’t want to go there. After Jane’s death, I asked our internist why he never talked to her about her illness. His reply: “We believe it will make the patient only depressed and frightened.” What do physicians think is going on in the heads of Alzheimer’s patients? Their heads are full of uncertainty, fear, sadness, and a sense of isolation.
I believe most physicians don’t talk to their patients about Alzheimer’s because in reality they know little about the disease other than it causes memory impairment and periods of emotional instability and limits executive function. Perhaps other physicians feel the press of time during brief appointments. Nevertheless, physicians should talk about it. If they don’t know what to say, they should learn.
At age 94, I have been a physician for 57 years. I knew essentially nothing about Alzheimer’s and, to my knowledge, had never seen an Alzheimer’s patient. As a psychiatrist, I saw patients with “senility” but never Alzheimer’s. Or did I just not know what to call it back in the 60s, 70s, 80s, and even the 90s?
Suddenly I had the sad but love-filled opportunity to be the sole caregiver for my life partner. The experience expanded my knowledge, enlarged my life, strengthened my being, enriched me emotionally, and deepened my faith.
Jane and I talked almost daily, often two or three hours, about what was happening in her head. Her intelligence, emotional depth, uncanny insight, verbal abilities, and trust in me enabled her to share her thoughts and feelings. I was her pupil. She taught me Alzheimer’s. I share her insights with others by reporting the last six years of her life in my book An Alzheimer’s Love Story and in lectures I give on the subject.
Jane described her observations, thought processes, memory, and emotions. Jane might remember only a small segment from an entire episode in our day. For Alzheimer’s patients, life is not a running film but isolated snapshots they try to connect, a jigsaw puzzle with some pieces they will never find. Jane often did not hear sentences but just words that sometimes never came together with meaning.
Jane’s impaired executive function took over and prevented her from completing minor household tasks, even those she enjoyed. She was often “lost” in her immediate environment. Yet 12 days before her death, we talked calmly and rationally about our plans related to dying and who might die first. Later she thanked me for our talk.
She described her anger, her fears, her sadness. “It’s terrifying to watch my feelings take over and put ideas in my head that I don’t want to be there and cause me to say hurtful things I don’t want to say,” she said. When the storms subsided, she said she felt totally humiliated, scornful of herself, and deeply embarrassed. We spoke openly about these episodes. We called them “Alzheimer’s storms” and likened them to summer storms that come and go, last minutes or hours, but always pass. Those lasting for days were blissfully forgotten. At lowest ebb, she wanted to die and threatened suicide. This was her greatest fear in the midst of an Alzheimer’s storm: “Someday I will always be like this.”
They say, “If you’ve seen one Alzheimer’s patient, you’ve seen one Alzheimer’s patient.” I say, “If you listen long and carefully to one Alzheimer’s patient, you will understand all Alzheimer’s patients.” ■